
As a family, we know all too well how life-changing a TBI is to
everyone involved, and The Phoenix Fund was created as a result of
our own unexpected need to re-invent our lives. We've found many of
the gaps and fallen in many of the holes inherent in making this
adjustment through our own personal experience. The Phoenix Fund
strives to eliminate the need for other families to go through this
devastating change in their lives by way of stressing awareness and
education. There is no cure for TBI except prevention, and there
can be no prevention without awareness and education. We are
staunch supporters of the leaders in the TBI Community that
provide direct care for survivors, for those that work
tirelessly on the Phoenix's behalf. We don't claim to be experts -
we're one family trying to make a small difference in eliminating
this Silent Epidemic. We feel strongly that, like us, many of
you may not be aware of the immensity of this problem and we want
to be one voice of many that are attempting to break this
silence. We want also to be very clear that we, as
Josh's family, have nothing monetarily to gain from this
foundation. We are aggressively pursuing charitable status and as
such, we cannot benefit in any way, shape or form through this fund
- that is not and will never be our intent with this
endeavor.

Our family remains on the path of adjusting to a Phoenix
lifestyle. We've slept too many nights in waiting room chairs,
we've fixated on vitals monitors as our only communicable link to
our son, we've had to prepare ourselves, our other children and our
extended family for what seemed to be imminent death. We've cried,
prayed, grieved, and collapsed with relief. We've alternated
between incredible confusion, anger, thankfulness and determination
- sometimes all in the same day. We've asked thousands of
questions, learned a lot, and still remain totally baffled by so
many things. We've kicked medical staff out of our son's room and
home, but we've hugged countless others. We've learned the hard way
that there's a big difference between "providing care", and
"caring", feeling relief and comfort with some care-givers, "on
guard" with others, and downright irritated with others.
We've heard all of the promises, all of the encouragement, and all
of the prognoses, and have learned a little something about sifting
through it all to extract the truth. We haven't worked a
typical work-week, or lived anything resembling a normal life for
almost four years. We've laughed, cried with happiness and in
despair, and had to learn more patience than we thought humanly
possible. We've been disappointed, unbelievably frustrated, and at
times, have almost given up hope. But we've been resilient,
determined and become too stubborn to give up. We've split up to
"tag-team" responsibilities and lived in two different homes while
we added on and modified our home to be accessible, we've logged
thousand of miles and cell phone minutes, and worked numerous jobs
consecutively to pay for it all. We've fought for every available
benefit we could to assist our son, and have been turned down too
many times due to government and insurance red tape. We've had the
good fortune to discover we have an incredible support system in
place with family, friends, organizations and employers. We've been
on some massive roller coasters, and incredible swings in fate.
We've thrown parties, and secluded ourselves in all-night vigils.
We coordinate countless agencies, insurance companies, doctors,
therapists, nurses, trainers, specialists, treatments and
appointments on a weekly basis. In short, we've dedicated our lives
to getting our son settled and headed in the right direction. But
we also realize that we've been very lucky in so many ways to be
able to respond and react as we have. Most importantly, we have an
absolutely heroic Phoenix in our midst - we've learned more about
attitude and determination from our son in the last four years than
we could ever imagine. We've been witness to some horrific stories
of families that haven't been nearly as lucky as we have. This Fund
is for all the Phoenixes and their families that are in the process
of making similar adjustments in their lives.
Our intent with sharing our journey, introducing you to the
stories of Josh, Chris, Alicia and Sean, and starting this
foundation and website is multi-faceted. First, we want to remind
everyone in a very real and personal way how truly fragile life is
and how incredibly quick it can change forever - for anyone. Don't
ever take anything for granted - it can all be taken away in a
heartbeat. Secondly, we want to raise your awareness of Traumatic
Brain Injuries - a brain injury truly is the last thing on your
mind until you're living with it day in and day out. Like you, we
had absolutely no idea of the potential consequences of a "simple"
concussion, and the prevalence of Traumatic Brain Injuries until
"it happened to us". Nobody would ever dream of finding themselves
in this situation, in this position. Our most basic hopes are that
you will become more aware, educate yourselves, and teach your
children, grand-children, nieces and nephews. While we would never
encourage anyone to live in a bubble and not experience life, we
hope you will go into your activities with your eyes open, know the
dangers, and act accordingly. Lastly, we would hope that you always
keep the Phoenix in your thoughts and prayers, and perhaps
contribute to help survivors and their families navigate and create
their new lives after TBI. These are ordinary people, now living
extraordinary lives, witnessing incredible recoveries and being
inspired by the amazing feats of their very own Phoenix. As a
"silent epidemic" Traumatic Brain Injury survivors eventually
experience a vast under-funding of benefits, support, therapies and
rehabilitation - help that they truly deserve and need. Recovery
takes a lifetime for our Phoenixes, benefits abandon them - many,
even in the medical community, are willing to let them "plateau",
to settle for "this is probably as good as he/she will get". We
just don't seem to be able to reach to that conclusion - we hope
you will support our Phoenixes and their families rebuild their
lives.
A heartfelt Thank You to everyone that has read our stories,
volunteered time and money to TBI causes, and especially for having
learned from our pages so that they can live their lives more
informed, more prepared, and more understanding of a largely
ignored epidemic in our society. Be well!